Wednesday, August 22, 2012

Caleb has made significant progress in the last couple of weeks. Significant. Progress that came at just the right time. I had been feeling like we were losing so much ground because of his swollen knee (that whole thing is still a mystery even after 2 x-rays and blood work. Oh and the knee is still swollen, although it is better). He took it easy in therapy for several weeks because we were so worried that we would do more damage to the knee. I was so frustrated during that time. I had psyched myself up to climb the mountain again, only to be sidelined because of the knee. I have felt absolutely panicked because Caleb starts school next Monday and he was still lacking in strength. I kept wondering if we were pushing him to do things that he just couldn't do, and may never do again. We've (or he's) been working so hard the last couple of weeks. And as a result of all that hard work, there is progress. All of a sudden his sit-ups are better and his bridges are higher. He is getting up to a tall-knee position. He is climbing up on the couch. All of a sudden he is getting stronger, and I can see it.

And today this:

Standing up.

This is the first time I have seen him stand up since April 2nd, the day before his tethered cord surgery.

Over 4 1/2 months since I've seen him hold his own weight with his legs.

4 1/2 months.

He obviously has a long way to go to get back to where he was pre-TC but I see the possibility now. A possibility that I didn't see a month ago. I'm just so glad to see his hard work paying off. I know he has felt discouraged too. Who wouldn't? He sees the progress he is making and I see him gaining confidence and pushing himself. It is still a long way up the mountain but I feel like I just caught a glimpse of what is to come.

The view looks pretty good from where I sit right now.

It was definitely a good day for this momma.

Now having said that...if I'm ever told that he needs TC surgery again, we will promptly pack our bags and move to a tropical island, where we will put our heads in the sand like an ostrich and pretend we never heard the words "tethered cord".

Monday, March 19, 2012

I know that is such a random title for a blog post, but it sums it all up, so I went with it. Last week Caleb was scheduled to pick up his new AFO's. The clinic we go to has a really nice accessible playground so I decided to take the boys there for some playtime and a quick picnic before Caleb's appointment.

Benjamin cautiously checking out the shaky bridge.

He determined the bridge was safe to cross so he bolted!

(notice Benjamin's t-shirt, it reads: "I rode the Wonderland Express", I got it for him at Morgan's Wonderland since he enjoyed the train so much)

The boys pretending to be train conductors.

Caleb working hard to push up the ramp.

He made it! A victorious grin!

Benjamin standing by the train's smoke stack. This boy loves trains.

After our little picnic in the park we headed in to get Caleb's new Camo AFO's.

They came out really cute, I think he was pretty proud of them too.

So, I covered the "picnic at the playground", and I covered the "new AFO's", now I guess I need to explain the "worried momma" part. I've noticed in recent weeks that Caleb has been struggling to walk a bit. His right foot is turning out more and he just seems more clumsy. He gets fatigue really quickly when walking and complains that his legs are tired even when he hasn't been walking much. His knees are giving out on him and he seems to be supporting himself more with his arms when he walks instead of letting his legs carry his weight. He will walk a few feet and then he wants to sit down. His PT at school noticed it too. I knew his AFO's were too small and I had a lot of hope that these new AFO's would offer him a bit more support. Granted he has only had the new AFO's less than a week but I really don't know if they are helping much. And some days are better than others, some days I think..."well ya know, maybe it's not so bad..." And then other days I know it is bad. Of course I am thinking it is tethered cord symptoms pushing through. Tethered Cord. The thing all of us SB parents know is there but we hope and pray that our child never has any symptoms. I fear Caleb is having symptoms. So I went back and viewed videos of Caleb walking from months ago, even a year ago and I definitely see a decrease in function and strength. And then I started wondering if the 2 UTI's Caleb has had recently could be related to tethered cord?? I hated to make that phone call to the neurosurgeon. I felt like by making that call I was saying without a doubt that Caleb needs surgery. It made it feel more real and I don't want it to be real. But of course there is a process to determining if Caleb is truly showing signs of tethered cord. So, I called. It looks like the next step will be a full MRI (not scheduled yet) so that the neurosurgeon can get a good look. So we will start with that and see where we go from there.

One day at a time.

"For I am the LORD, your God, who takes hold of your right hand and says to you, Do not fear; I will help you."

Isaiah 41:13

Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.

Tuesday, February 21, 2012

Caleb had Dental and Ortho Clinic today. Caleb barely survived seeing the dentist. He did really well with the cleaning and the exam but he was NOT a fan of the x-rays. He just couldn't bite down on those x-ray thingies (that is the actually medical term) without gagging. So after being somewhat traumatized, the dentist gave Caleb this:

The playdough came in handy as we waited to see the Orthopedic staff.

Getting a bit silly with playdough.

Reading a book as we wait.

Let me just tell you that this kid can read. Really well. I have been blown away by how well he is reading. This time last year he was struggling to learn even a handful of sight words and now he can sit down and read books all on his own. It is so fun to listen to him read. I just love it.

From books to video games....more waiting.

Time to get fitted for some new AFO's!

Caleb was really in need of some new AFO's. He has grown so much that his current AFO's were so short that they weren't doing enough to support his legs fully. I had noticed that his knees were bending in a bit when he walks lately and I was starting to get a bit worried but I was told today that it is likely due to the fact that his AFO's were too short. His news ones will solve that problem.

So the big decision: What print/pattern did Caleb want for his AFO's this time?

Is that such a boy thing or what! He almost went with the American Flag pattern (he is very patriotic) but then decided on the camo instead. It will be a few weeks before we pick up the new braces, I'll post pics when we get them.

I want to brag about Caleb for just a bit. He is walking almost 100% of the time at school. He takes his wheelchair into the school and parks it by the classroom and it stays there until the end of the day. He is walking (with his walker) the rest of the time! And they do A LOT of walking during the day because they go to different classrooms, the cafeteria, the gym, outside, and he goes to the nurse 2x a day. He is walking for all of that! I am just amazed at his endurance. When he was younger, my biggest hope was that he would be able to navigate around a classroom with braces and a walker and then use the wheelchair for everything else. He has totally exceeded my hopes. I truly never dreamed that he would walk as well as he does. I just never expected it. I think he will always need his wheelchair (and I am 100% okay with that) but I'm so thankful that he has this other option as well. I'm just tickled to death. I'm so proud of that boy.

Friday, January 20, 2012

Caleb had physical therapy with Ms. Vicki yesterday. The weather was beautiful so she worked with Caleb outside. I don't always see Caleb making progress, and maybe that is just because I see him every single day so I often miss the big picture. Ms. Vicki helped Caleb walk with his tripod canes. I have definitely seen a bit of progress with those, he is able to stand up using the canes for several minutes which is something that he was never able to do with the forearm crutches. I am so glad I bought these canes because they offer him such a wide base of support. He only has AFO's to help brace his ankles so when using the canes or forearm crutches he really has to utilize a lot of strength in the hips and trunk, not an easy task for him.

Ms. Vicki had Caleb stand against the house and throw the frisbee. Sounds easy enough, but that requires a lot from him. I love that she tries to make PT as fun as possible so that Caleb is working....but he doesn't quite realize he's working. :)

He is leaning against the wall a bit for support but he is still working very hard.

Sometimes I just look at him and think: "This kid blows me away."

And just because this is too funny not to share...

Notice the arrows pointing at a giant white tooth!

Caleb has a VERY loose tooth up top and it is so loose that is will stick out really far past his lips when he smiles. It was totally cracking me up, I kept telling him that he looked like "Tow Mater"! I imagine that tooth will fall out before this weekend is over...maybe before this day is over. How cute is this kid going to be with a missing top tooth! Stay tuned for pictures of a big toothless grin!

Wednesday, November 09, 2011

A dear friend and fellow SB mom reminded me of this post I made back in January. It is one of my favorite posts but it had been quite awhile since I had read it myself. As I read through this post, I found myself getting very emotional. Even I need to be reminded of how far Caleb has come. I know this post meant a lot to some of the parents out there and since there have been new followers in recent months, I thought I would re-post. Enjoy.

I follow a lot of blogs, blogs done by other SB moms (and one dad) from all over the country...and a couple folks in Canada. A shout out to you gals in Canada! I love reading about all of these other kids that are living life with Spina Bifida. I love reading about their many victories. I pray for them when they are facing surgeries. I care about all of these kids and their entire families. Recently I have noticed that many of the moms out there are struggling. It seems like the moms that have the younger kiddos, under 2 years old, are struggling the most. It is to you that I am writing.

So many of you are hurting because your baby isn't sitting up yet, isn't crawling, won't roll over, can't stand up, and can't walk. You are frustrated. Beat down. Exhausted. Sad.

You feel like you are giving everything you have to help your child reach these milestones, but it's not working. Or maybe you are beating yourself up because you don't think you are doing enough. It's your fault.

I remember those days so well. I cry sometimes when I read your blogs and I hear the pain in your words. That pain is very familiar to me.

I had several friends that had babies right around the same time Caleb was born. And I can vividly remember how different he was, even as an infant. Caleb struggled to keep his head centered, even when he was laying down, he would just look to the right or the left. He had to work so hard to keep his head straight.

I remember having a play date with some former co-workers and their babies could hold their heads in the center, but Caleb couldn't. Something so simple. My son couldn't do it. I remember leaving that same play date crying. And honestly I eventually stopped going to play dates altogether. I didn't want to be reminded of all that was different about Caleb.

So, getting Caleb to hold his head in the center became my priority.

That was the goal we would work on.

As an infant, Caleb did not move his legs at all. And I mean no movement. They just flopped out to the side like a frog.

I saw how other babies would constantly kick their legs and could even stand up a little when held. Not Caleb. No movement, no feeling, nothing. Just sweet little legs that flopped out to the sides.

That became my priority. I just wanted him to try and use his legs. That was the new goal.

Next was head control. I called Caleb "bobble head" because the boy could not hold up his head. It was just too heavy.

He required so much support. I just wanted him to be able to hold his head up.

That became my priority.

My goal for him.

He was probably 7 months old before he could hold his head steady.

We bought him an excersaucer but he was just too unstable in it so we had to wrap blankets all around him.

His PT had to make him a special seat to go in his high chair so that he would have more support when eating.

It felt like we were constantly having to do things, adapt things, to help Caleb. Things that every other baby could do with such ease, was such a chore for my son. Everything was a reminder that he was different.

The next priority was rolling over. I worked and worked with him. Desperate for him to just roll over. Begging him too. Bribing him with toys just out of reach so that he would roll over to get them. Nothing. I was convinced that he would never roll over. While other babies his age were sitting up, crawling, and even standing...my baby couldn't even roll over. Caleb was 10 months old when he rolled over for the first time. It was to get a teddy bear that was out of reach. I cried. Rolling became his means of getting around for a long time. He would just roll across the living room to get to what he wanted. He found a way.

And then came the milestone that I thought would absolutely break me. Sitting. Caleb could not do it. I did everything the PT told me to do, I worked with him daily. I prayed and prayed. I asked family to pray. I was desperate for him to sit up. I remember calling my mom and just sobbing because I didn't understand why my one year old son could not sit up on his own. Caleb was about 15 months old before he could sit up well on his own.

With every milestone reached, there was another one that needed to be worked on. For every mountain he climbed, there was another one waiting.
Each goal became my priority.
Each mountain became my focus.

I made myself a calendar that listed all the things that his PT wanted me to work on. I put the list on the fridge as a reminder of what I was supposed to be doing to help Caleb reach his goals...which were really my goals to begin with. I would highlight the things I worked on for that day. And I would beat myself up endlessly on the days that I didn't get to everything. I felt like a failure when I didn't work with him enough. I carried a heavy burden. Every day. Every time I went to the fridge, I saw that list, the things I was supposed to be doing. A constant reminder that I wasn't doing enough. I wasn't enough.

I think us moms are way to hard on ourselves. I know I am. This idea that we have to do it all, be it all, every single day. I think all moms carry that weight but us moms with special needs kiddos have additional weight to carry. We have to be caregiver, nurse, advocate, physical therapist, chef, maid, chauffeur, teacher, administrative assistant, mom, and wife. And that's just naming a few. We wear a lot of hats.
We have to be experts in UTI's, shunt failure signs, tethered cord symptoms, non-verbal learning disorders, and more. We fight for our kids. We argue with doctors who think they know more about our child than we do. We push therapists to get our child the braces and equipment they need. We deal with stares from strangers.

I hear how tired so many of you are. How sad you are. You love your child so much and your heart is breaking because he/she isn't walking. Or sitting up. Or talking. Or standing. Or whatever. It's always something. There is always something to work on, a goal to achieve, a milestone to reach. A mountain to climb. It's exhausting.

Caleb is 5 1/2 years old now. I've learned over the years that Caleb does things in his own time. He works hard and he does as much as his body will allow him to do. And I've seen him climb many mountains. I've seen him find a way. I've seen him succeed.

I've seen him find joy in mobility.
Something that many people would considered a burden, a hindrance, something that he is "bound" to, means freedom and independence to Caleb.

I've seen him do things we were told he wouldn't be able to do.

I've seen him do things I didn't think he would ever do. Like crawl on his hands and knees. He crawled on his belly until he was 3 1/2 years old. I had all but given up on him ever being able to get his knees up under him. But he did it, he got stronger, he figured it out. In his own time.

I've seen him graduate from HKAFO's to just AFO's.

And I have seen him walk. I have even seen him run.
I've seen him get stronger and stronger. I have seen him use legs that he can't feel.

And I have seen him redefine.

I don't have it all together, I still worry, I still beat myself up on occasion. As Caleb has started school, I have found new things to worry about. New goals to reach. But I'm learning to just appreciate all that he is and all that he has accomplished. My burdens aren't his to carry. He isn't sad, so why should I be? Caleb's a happy kid. He always has been.
Even when he couldn't hold up his head, he was still smiling.
Even when he couldn't sit up on his own, he was having fun rolling all over the place.
It didn't bother him that he crawled on his belly instead of his hands and knees, he still got to where he needed to go. Getting a wheelchair didn't make him sad. He loved it. It changed his life and his personality for the better.

So, to all of you moms out there that are just plain tired. Beat down. Sad. Defeated. Go look at your the precious child God has given you. We have beautiful, strong, resilient, determined kids. Our kids have and will achieve great things. Our kids may never blend in with the crowd, they may always stand out, but they will change this world and the people around them. They already have. There is great joy in that.

Don't let yourself drown in the milestones. Don't let each goal not yet reached consume you. Your little one will climb that mountain, just maybe not as fast as you would like. So, take the time to enjoy the scenic route up the mountain, and anticipate the beauty and the joy that awaits at the top.

Sunday, September 25, 2011

Caleb had his first Miracle League baseball game of the fall season yesterday. His buddy Jacob is playing too, although on a different team. Caleb was so excited to be playing baseball again. I'm still not convinced that he has any clue what baseball is about but he loves to hit the ball and run the bases. And I guess that is all you really need to know.

Caleb and Jacob

Caleb had to warm up that arm before the game, so he and daddy threw the ball back and forth for a few minutes.

Love this picture

Caleb was one of the first kids to bat.

Of course, he knocked this ball right out of the park and then made a quick run to 1st base!

Waiting patiently at 2nd base.

And running to home plate!

While bubba was busy playing ball, Benjamin had to find some fun of his own.

I'm pretty sure he shouldn't be touching this huge piece of construction machinery...but oh well. He kept asking me for the keys so he could turn it on!

After the game we took the boys to the all-accessible playground by the baseball fields.

All-in-all, a good fun-filled Saturday morning.

And, as if baseball and the park wasn't enough fun for one day, we got this little lady yesterday too....

So precious right? We aren't entirely sure what kind of dog she is, hopefully a vet will be able to give us a better idea. All we know is she is cute, sweet, pees all the time, and the boys LOVE her. They. Love. Her. Her name is Izzy.

Puppies are kinda like newborn babies in some ways. Izzy doesn't sleep through the night. She is really alert and playful for about 15 minutes at a time and then she needs a nap. Did I mention she pees a lot? I admit to having a moment of panic after Glenn brought her home. A moment where I asked myself: "What have we done? Why in the world did we just get a PUPPY!?" But she's so cute that it is hard not to love her and the boys are totally smitten with Izzy. They will not/can not leave her alone. Poor Izzy can't even get a decent nap in because the boys can't keep their hands off of her. Truly, having a puppy hasn't been that stressful, it's the Kids + Puppy = STRESS. We are constantly saying things like:

"Caleb get your finger off of her eye."

"Benjamin don't pick her up by her neck."

"Caleb leave her alone so she can eat please."

"Benjamin, she doesn't need your monster truck to play with."

I know that once we have had Izzy awhile the novelty will wear off and the boys will relax a bit...I hope.